This is the post I was working on this week, but was diverted by the news about Brandon's back. Brandon is about to enter his last year in his school's adult transition program. In Texas you can stay in this program as long as there is a need to the end of the year you are 21. Brandon is still 21 and will turn 22 in December. So he will be able to stay in the program through May 2015. As a wise friend told me 3 years ago, you have 4 good school years left, so make the most use of your school while you have the great supports. I have taken that to heart and decided the plan would be for Brandon to leave school with a full week of work, activities, exercise and socialization which would seamlessly continue without the school supports. The most important part of these 4 years is learning about working for an employer, learning the value of employment, learning job skills and finding the right job from those job trials, trying to become as independent as possible and stretching the number of hours Brandon is about to work. For most kids leaving high school this may seem relatively easy, but for Brandon this has been a major hurdle and a great deal of hard work for him. He has received fabulous support from the school, the employers especially UT, Brandon's transition program through UT and Brandon's aides who have continued this work through the summers. When Brandon starting his volunteer job at UT he really didn't know much about how to work, how to do his job tasks independently, coming up with creative accommodations and learning how to develop relationships with his work peers. Brandon and his network looked at all the job trials he has had and identified that he does best in a job with interaction with his peers, sorting and delivering items such as the mail and one that is repetitive. We worked with UT with this criteria and found the perfect job for him to learn, which is sorting mail for a department and delivering the mail. For UT, this was also a good match because no one wanted to go to the 1st floor, get the mail and deliver the mail.
The school worked on job tasks, provided a job coach, visual assistance, OT/PT assistance and slowly and patiently worked with Brandon for the last 1 1/2. No one really knew what Brandon was really capable of doing in this job, but no one was willing to give up. In the beginning Brandon needed many prompts, assistance sorting, someone with him all the time, and prompts to initiative conversation with peers. Here is a video a five months after Brandon started this job. Lots of support and everyone wanting Brandon to be successful
Brandon working at UT at 5 months
The aides that work with Brandon in the summer have not seen Brandon in his job since last summer. But we were about to transition the summer jobs to Brandon's summer aides so Ross was the first one to see the progress Brandon has made in his job at UT. He went with the school to UT to observe so he would know what Brandon was doing for the summer. Ross contacted me and said he had tears in his eyes when he saw everything Brandon could do and how independent and happy he was. That made me feel so good about pushing everyone hoping this would be a success. Two weeks ago Kassie, Brandon's aide in school/last summer, took Brandon to UT. This was the first time she was with him for over a year. Brandon and Kassie are tight and Brandon was really proud to show Kassie his progress. Brandon did all of his tasks independently, had conversations with everyone along the way, sang and was really happy and confident and went up flight after flight without assistance. Kassie started to cry. Brandon asked Kassie "are those sad or happy tears?" She said "Brandon they are happy tears because I am so proud of you?" Brandon said "Kassie dont cry happy tears, cry sad tears because you are not going to see Ringo Starr with me" and he patted her on the back letting her know it was okay. She texted me this and I started to cry. But I was also crying happy tears. It is a long road and a great deal of work. But it is worth it. Brandon knows he has a place in this world, he is valued and he is confident. I am soooo proud of him. Kassie took a video of Brandon working in his job and I have posted it. Just know that in reality, the school and Kassie/Ross are dropping Brandon off at the building and he is doing this job by himself. But for the video Kassie followed him around. You will also see a little Brandon Beatles humor.
Brandon working at UT after 1 1/2 years
One proud mommy
Leah
Friday, June 27, 2014
Wednesday, June 25, 2014
I am in shock - again!!!!!
Last night I was working on a fabulous post and movie about Brandon and how proud I am of him and his work. But I will have to save that for another night. Today I am back in shock, like I have been so many times in the last 21 years. A new diagnosis, a new procedure, a new direction, all start with shock, depression, learning about what it means, acceptance and moving forward. I hate the shock part. And I really hate it when I am not prepared to be shocked.
Today I took Brandon to his new adult scoliosis specialist here in Austin. He came highly recommended from many sources. So I was feeling confident about our appointment today. Just a check on Brandon's scoliosis. In fact I was feeling a little guilty for going in at all and wasting everyone's time. In 2011, Brandon had his last check at Scottish Rite and the curvature was at 44%. Below the dreaded 50% which is when the doctors start talking surgery. At Scottish Rite we decided that Brandon was fine without surgery, he was doing well and he was past his growth period. He has not gown an inch since 2011. We all felt confident that Brandon would stay at 44%. Again 44% is not perfect, but it is manageable.
Brandon had an x-ray at the office and we pulled it up in the exam room. Brandon has gone from 44% to 52% since 2011 and he has not grown an inch and has the same weight. This really puzzled me. Apparently there have been new studies that indicate Brandon's type of scoliosis can continue to progress, The options for treatment is to do nothing, but risk extreme pain for Brandon in the future and possible progression of the curvature leading to a very extensive, complicated and painful surgery in the future. The alternative is do move forward with the surgery to correct soon which has a high rate of success, less extensive and will repair Brandon's spine. It's a crap shoot. One that I don't take lightly.
Brandon would be in the hospital 5 to 7 days (that means 7) and could not go to school or work for 6-8 weeks. Brandon is headed into his last year of school in the adult transition program and this would be a major consideration of when to have the surgery if we decide to go this direction. We are planning on going to England next summer so I would want Brandon to be completely healed prior to us leaving.
Brandon immediately said he wanted to have the surgery. But I reminded him of the pain from the past foot surgery and related that pain to what this surgery would be like. He brushed off the topic and started talking about the Beach Boys. I wish I could do that.
This also is not great timing for Brandon related to work. We are making such great progress on Brandon learning how to work independently at a job and I think we are ready to start looking for competitive employment. We don't want to lose the progress we have made for the last 3 years.
So I have decided we need to get a second opinion (now I am in research mode), reach out to Scottish Rite for their advise and the great "mom network" for their wisdom. I am trying to move past the shock and get all the information I need to help Brandon and I make a decision. But geez, I am feeling a little sorry for Brandon. There is not good answer.
More later
Leah
Today I took Brandon to his new adult scoliosis specialist here in Austin. He came highly recommended from many sources. So I was feeling confident about our appointment today. Just a check on Brandon's scoliosis. In fact I was feeling a little guilty for going in at all and wasting everyone's time. In 2011, Brandon had his last check at Scottish Rite and the curvature was at 44%. Below the dreaded 50% which is when the doctors start talking surgery. At Scottish Rite we decided that Brandon was fine without surgery, he was doing well and he was past his growth period. He has not gown an inch since 2011. We all felt confident that Brandon would stay at 44%. Again 44% is not perfect, but it is manageable.
Brandon had an x-ray at the office and we pulled it up in the exam room. Brandon has gone from 44% to 52% since 2011 and he has not grown an inch and has the same weight. This really puzzled me. Apparently there have been new studies that indicate Brandon's type of scoliosis can continue to progress, The options for treatment is to do nothing, but risk extreme pain for Brandon in the future and possible progression of the curvature leading to a very extensive, complicated and painful surgery in the future. The alternative is do move forward with the surgery to correct soon which has a high rate of success, less extensive and will repair Brandon's spine. It's a crap shoot. One that I don't take lightly.
Brandon would be in the hospital 5 to 7 days (that means 7) and could not go to school or work for 6-8 weeks. Brandon is headed into his last year of school in the adult transition program and this would be a major consideration of when to have the surgery if we decide to go this direction. We are planning on going to England next summer so I would want Brandon to be completely healed prior to us leaving.
Brandon immediately said he wanted to have the surgery. But I reminded him of the pain from the past foot surgery and related that pain to what this surgery would be like. He brushed off the topic and started talking about the Beach Boys. I wish I could do that.
This also is not great timing for Brandon related to work. We are making such great progress on Brandon learning how to work independently at a job and I think we are ready to start looking for competitive employment. We don't want to lose the progress we have made for the last 3 years.
So I have decided we need to get a second opinion (now I am in research mode), reach out to Scottish Rite for their advise and the great "mom network" for their wisdom. I am trying to move past the shock and get all the information I need to help Brandon and I make a decision. But geez, I am feeling a little sorry for Brandon. There is not good answer.
More later
Leah
Sunday, May 11, 2014
Importance of Mother
For the last month I have been doing the dreaded task of cleaning up old files that I have stored in the attic. I have kept 21 years of records on Brandon. Every school assignment, paper, homework, IEP goals and objectives, medical records, nursing homes, Medicaid information, you name it I kept it. When I have to deal with the records it is almost an unbearable task. This is because there are boxes and boxes of records. But also because it is very emotional. Finally two weeks ago I went through all of the boxes and shredded hundreds of pages of records. I went from around 30 big boxes to around 4. Why did I keep all this stuff? I was afraid I may have an issue with Brandon's school, insurance, Medicaid, SSI and would need these records to verify Brandon's abilities and conditions. I still have all of Brandon's important medical records, but threw away school records that are not important at this point. There are also some very sweet and amazing papers included in the boxes. I found this one and decided to post today for all you mom's. Included in the page is a note from Brandon's aide stating that Brandon had the aide write this for an assignment. They typed it up and laminated it for me.
Importance of Mother
My Mom is important to me. I need food, shelter, and air but my Mother is the most important person that I need. I need her love.
My Mother gives me support. She helps me with my homework. She helps me feel better when I am sick. Also, she helps me with my chores. She comforts me when I am upset.
Another important thing that my Mother does is to love me. She hugs me. I can count on her always. She is very responsible about taking care of me. My Mother knows me more than anybody.
I watch movies during the holidays with my Mother. I like spending time with her. My Mom makes me my favorite meal Marconi and cheese. My mom accepts me for who I am. Spending time with my Mom makes me happy.
I love the way my Mom supports me even when I don't want to do something. I may say, "Why me?" but I know it is because my Mom loves me. Sometimes I don't want to clean up my room. My Mom encourages me to do things even when I don't want to because she knows me better than anyone and she knows when to push me. Most of all, I love her hugs. Those I can always count on.
By Brandon Rummel
I always tell Brandon that I am the luckiest Mom in the whole world because I can have hugs and kisses whenever I want. Happy Mothers Day everyone.
More later
Leah
Importance of Mother
My Mom is important to me. I need food, shelter, and air but my Mother is the most important person that I need. I need her love.
My Mother gives me support. She helps me with my homework. She helps me feel better when I am sick. Also, she helps me with my chores. She comforts me when I am upset.
Another important thing that my Mother does is to love me. She hugs me. I can count on her always. She is very responsible about taking care of me. My Mother knows me more than anybody.
I watch movies during the holidays with my Mother. I like spending time with her. My Mom makes me my favorite meal Marconi and cheese. My mom accepts me for who I am. Spending time with my Mom makes me happy.
I love the way my Mom supports me even when I don't want to do something. I may say, "Why me?" but I know it is because my Mom loves me. Sometimes I don't want to clean up my room. My Mom encourages me to do things even when I don't want to because she knows me better than anyone and she knows when to push me. Most of all, I love her hugs. Those I can always count on.
By Brandon Rummel
I always tell Brandon that I am the luckiest Mom in the whole world because I can have hugs and kisses whenever I want. Happy Mothers Day everyone.
More later
Leah
Monday, February 10, 2014
BEATLES WEEKEND AT THE BEATLES FEST IN NYC
BEATLES WEEKEND AT THE BEATLES FEST IN NYC
Brandon and Leah at the JFK Dedication of the Beatles landing 50 years ago
Brandon and Leah with the Stewardess's on the flight with the Beatles 50 years ago
JFK Plaque
Brandon with some "Beatles" from Liverpool
The Liverpool Delegation
He is Happy
Brandon with Freda Kelly - She ran the Beatles fan club. She has a new movie.
Get it if you can. It is on Amazon.
Brandon with Billy J Kramer
Brandon with Mark Hudson (Hudson Brothers/Ringo)
Brandon with Mark Rivera (sax with Ringo and Billy Joel) Great Guy. Brandon really wanted to meet him. We saw him when he played with Ringo.
Brandon with Julia Baird (John Lennon's sister)
Mark Hudson and Mark Rivera playing with Liverpool. Great set
Donovan
Chad and Jeremy
The Smitereens
Lots of Beatles music 24 hours a day. My favorite was Peter Asher. What an amazing story. Such a music career and he did a great job of his story and his story with the Beatles. Also there was Prudence Farrow with sessions on Ashram. Too many musicians, too little time. Brandon loved every second. He was with his Beatles peoples and loved it. A lasting memory for all of us.
FABULOUS NEW YORK CITY WEEKEND
FABULOUS NEW YORK CITY WEEKEND
Some pictures to remember or our New York City Trip
Top of the Rock Observation Deck
Empire State Building View from Top of the Rock
Kate, Brandon and Leah - Top of the Rock
Strawberry Fields - Central Park
Imagine - Central Park
The Dakota - With Kate, Brandon and Cliff (our guide)
Leah and Brandon at Imagine
Below the Dakota
Times Square
Rockefeller Center
Kate - Times Square
Radio City Music Hall
Brandon in awe in Times Square
The Apollo Theater
Ed Sullivan Theater
Tuesday, January 28, 2014
The Beatles and Brandon
When Brandon was in middle school, I drove him to school one morning and rushed Brandon in the front door to the other kids in his class waiting in the hall. You know how you are in the mornings, in a hurry, just trying to get your child to school, yourself to work and you really are not 100% concentrating on anything else. All of a sudden one of Brandon's classmates said to me "Ms. Rummel did you drive the Toyota Sienna minivan today? I all of a sudden stopped, came back down to reality, thought about it and said "yes I did". He started telling me all the statistics on why the Sienna minivan was a fabulous car with all the data stored in his mind. He was quite excited that I agreed and acknowledged how smart and observant he was. I also knew that cars was his thing. He knew everything about every car on the market and loved to study each fact about each car. I shared this with you to explain the Beatles and Brandon.
In the year 2000, the Beatles released the Beatles One album. At that time Brandon really was very silent. He rarely tried to speak a word, rarely would answer a question and instead would try to sign, or just ignore you so he wouldn't have to work so hard to get you to understand what he was saying. He used a communication device but when we are running errands, in the car or on the run he doesnt use the device. I had noticed that he just was giving up on trying to talk. At the time Brandon participated in music therapy. He was responding to music. He would try to sing a little, but the music therapist was using kids songs and that didn't seem to connect for Brandon. One night I bought the Beatles One cd. We were driving and doing our normal errands, I put the CD in and started singing with all those great songs. I loved the Beatles when I was young and knew all the songs. To my surprise, Brandon started singing as well. So I made a game out it and we took turns singing different parts in the songs. I thought - this is working and I bought another cd. Brandon couldn't get enough. When it was the Beatles he was non-stop noisy and happy. That was 14 years ago, and 100's of cds, downloads, YouTube videos, dvds, games, trivia, meeting with Ringo Starr, two Paul McCartney concerts and a Las Vegas Beatles Festival ago. Brandon has still not tired of the Beatles. He feels like the Beatles are like the car is to his friend at school. It is what we use to motivate him for a job well done. When Brandon gets in the car he immediately changes the radio to his Ipod Beatles music. I finally became wise and gathered all those cd's and put the music in the ipod. We had cd's everywhere and it was a mess. Brandon has spread his wings some and also likes the Who, the Beach Boys and Jimmy Buffet and several other bands of this ear. He can find all kinds of obscure songs on YouTube and they are usually related to something about the Beatles. He will tell me about a movie and I will find out that one of the Beatles sang a song in the movie. Like his friend with the car he does not miss anything having to do with the Beatles. We can be walking in a store and there is music playing lightly in the background and he will smile and start singing. I have to stop and pay attention and then realize it is one of the Beatles songs playing in the background. Today, Brandon is always talking, singing and making noise and the Beatles music woke him up and allowed him to feel safe enough to begin to sing. I have learned that in his head it is about the Beatles. He also did a video about the Beatles at a camp he attended and made 2nd place in a film competition. When he was in the hospital for H1N1 the only channel really available to him in ICU was the Disney Channel. He would strongly object if I changed it. Feeling bad for him I left the TV on Disney almost non-stop and he developed a liking to Selena Gomez. His like of Selena is for her to sing a tribute to the Beatles.
This summer, one of Brandon's therapist at school went to Liverpool England and to the Cavern Club. She found a guy who had an address for Paul McCartney. It has taken me six months to help Brandon write a letter. So a few weeks ago Brandon wrote a letter to Paul McCartney. I asked him what he would want to say to Paul McCartney. He stopped and thought and said "I just want to tell him thank you". I said what do you want to thank him for, and he said "for making me happy". Wow. Still makes my heard sink knowing the history of Brandon and the Beatles. Of course he added that he would like to meet him. So I added my own mom letter explaining and we sent it off.
Brandon just turned 21 and when he was 17 we developed a PATH for the future for him. Part of the plan is when Brandon has completed school, we will take a trip to England where he can see all the Beatles places (abbey road, Liverpool, the cavern club, etc). Brandon completes school in May 2015. But he has not been on a plane since 911. So a rehearsal trip is needed before a 10 hours plane flight. This worked out well because this is the big year of the Beatles with the 50th anniversary of the Beatles landing in New York City and their first gig playing at the Ed Sullivan Theater. I bought Brandon, me and friend Kate tickets to the Beatles Fest in New York City on the anniversary of the Beatles arrival. For the biggest Beatles fan ever, this is the ultimate Beatles event of his lifetime. He is soo excited. But all I can think is "it makes Brandon happy".
Next year - the International Beatles Fest - here we come. We will update after our adventure.
All you need is Love.
Leah
In the year 2000, the Beatles released the Beatles One album. At that time Brandon really was very silent. He rarely tried to speak a word, rarely would answer a question and instead would try to sign, or just ignore you so he wouldn't have to work so hard to get you to understand what he was saying. He used a communication device but when we are running errands, in the car or on the run he doesnt use the device. I had noticed that he just was giving up on trying to talk. At the time Brandon participated in music therapy. He was responding to music. He would try to sing a little, but the music therapist was using kids songs and that didn't seem to connect for Brandon. One night I bought the Beatles One cd. We were driving and doing our normal errands, I put the CD in and started singing with all those great songs. I loved the Beatles when I was young and knew all the songs. To my surprise, Brandon started singing as well. So I made a game out it and we took turns singing different parts in the songs. I thought - this is working and I bought another cd. Brandon couldn't get enough. When it was the Beatles he was non-stop noisy and happy. That was 14 years ago, and 100's of cds, downloads, YouTube videos, dvds, games, trivia, meeting with Ringo Starr, two Paul McCartney concerts and a Las Vegas Beatles Festival ago. Brandon has still not tired of the Beatles. He feels like the Beatles are like the car is to his friend at school. It is what we use to motivate him for a job well done. When Brandon gets in the car he immediately changes the radio to his Ipod Beatles music. I finally became wise and gathered all those cd's and put the music in the ipod. We had cd's everywhere and it was a mess. Brandon has spread his wings some and also likes the Who, the Beach Boys and Jimmy Buffet and several other bands of this ear. He can find all kinds of obscure songs on YouTube and they are usually related to something about the Beatles. He will tell me about a movie and I will find out that one of the Beatles sang a song in the movie. Like his friend with the car he does not miss anything having to do with the Beatles. We can be walking in a store and there is music playing lightly in the background and he will smile and start singing. I have to stop and pay attention and then realize it is one of the Beatles songs playing in the background. Today, Brandon is always talking, singing and making noise and the Beatles music woke him up and allowed him to feel safe enough to begin to sing. I have learned that in his head it is about the Beatles. He also did a video about the Beatles at a camp he attended and made 2nd place in a film competition. When he was in the hospital for H1N1 the only channel really available to him in ICU was the Disney Channel. He would strongly object if I changed it. Feeling bad for him I left the TV on Disney almost non-stop and he developed a liking to Selena Gomez. His like of Selena is for her to sing a tribute to the Beatles.
This summer, one of Brandon's therapist at school went to Liverpool England and to the Cavern Club. She found a guy who had an address for Paul McCartney. It has taken me six months to help Brandon write a letter. So a few weeks ago Brandon wrote a letter to Paul McCartney. I asked him what he would want to say to Paul McCartney. He stopped and thought and said "I just want to tell him thank you". I said what do you want to thank him for, and he said "for making me happy". Wow. Still makes my heard sink knowing the history of Brandon and the Beatles. Of course he added that he would like to meet him. So I added my own mom letter explaining and we sent it off.
Brandon just turned 21 and when he was 17 we developed a PATH for the future for him. Part of the plan is when Brandon has completed school, we will take a trip to England where he can see all the Beatles places (abbey road, Liverpool, the cavern club, etc). Brandon completes school in May 2015. But he has not been on a plane since 911. So a rehearsal trip is needed before a 10 hours plane flight. This worked out well because this is the big year of the Beatles with the 50th anniversary of the Beatles landing in New York City and their first gig playing at the Ed Sullivan Theater. I bought Brandon, me and friend Kate tickets to the Beatles Fest in New York City on the anniversary of the Beatles arrival. For the biggest Beatles fan ever, this is the ultimate Beatles event of his lifetime. He is soo excited. But all I can think is "it makes Brandon happy".
Next year - the International Beatles Fest - here we come. We will update after our adventure.
All you need is Love.
Leah
Brandon's Beatles Video
Brandon and Ringo
Friday, December 27, 2013
Medical Transition Update
This week I am am not feeling like the mom of the year. This is because of Brandon's medical transition from age 20 to now at age 21. I knew there were going to be some hiccups, some loss of medical professionals who have seen Brandon almost since birth, some changes in his benefits. I didn't realize they would all hit at once. I was so relieved, excited and proud that Brandon has turned 21. In the last 21 years Brandon has had great medical care and have received help for our family and caregivers to assure we all know how to handle Brandon's medical conditions. Without all this great care Brandon would have had many more struggles. I want to make sure all my friends with loved ones headed to age 21 are aware and are prepared before their young adult turns 21.
Last month Brandon did not receive his normal order of Pediasure paid for by Medicaid. Brandon has been on some form of medical formula since birth. It is what maintains his weight. Since birth, my dream for Brandon was for him to eat food just like all the other kids, through the mouth. I wanted to take him off any type of formula. It was a struggle. After 4 years of speech therapy and very little progress with eating food through the mouth, I insisted that Brandon be admitted to a rehabilitation hospital to attempt intensive feeding therapy. We were in the hospital for 3 grueling weeks. Brandon has intensive feeding therapy with the best team in Austin and finally after three weeks, Brandon left able to eat a small amount of pudding each sitting. I know that doesn't sounds like much, but for Brandon it was a total miracle coming from eating nothing. For the next 5 years we worked non-stop with an intensive feeding program. Brandon still had Pediasure added each day to maintain his weight but Brandon was close to a diet that could maintain his weight. At age 9, Brandon had a major setback. He was at school and choked on a hot dog. The school called 911, rushed in the nurses, and called me. By the time I arrived, EMS had cleared his airway but I could tell Brandon had serious aspiration. I bought him home hoping his airway was okay, but we ended up in the hospital within a few hours. Brandon had several swallow studies the next few weeks and it was clear he was aspirating with every swallow and there was possible damage from the Heimlich. We had to start over. Before beginning with a new round of therapy, I consulted with his specialists. They all agreed that eating for Brandon was about quality of life and not about maintaining his weight. They also agreed that Brandon should eat whatever he wanted knowing that the Pediasure would cover the other nutrients. Brandon is always at risk for aspiration but we limit his food to soft safe solids and monitor him when he is eating. It took another year to recover back to eating food safely through the mouth, but Brandon worked hard and he cleared the the swallow studies.
So again this month the Pediasure did not arrive. I called the durable medical equipment company and they said it was pending approval from Medicaid. It had been pending for over a month. In the meantime Brandon was almost completely out of food. I called the Medicaid office and finally found someone who could tell me why it was not approved. Since Brandon had turned 21, they reviewed his records and were not approving Pediasure. But they would consider Ensure (adult formula). We had been talking about moving to Ensure anyway. But I needed a doctors order. I called Brandon's gastroenterologist, but he is out until Jan 5th. That meant that I needed to get an order from his primary care physician. BUT the primary care physician (adult) that I choose already sent us a notice he was leaving his practice. I had another one I was considering, but realized that I needed to get in for a checkup for him to approve. I called and the next appointment was in March.
So now Brandon has no PCP and no Pediasure or Ensure. He also must move his dental coverage to his waiver benefits and must move his speech therapy to waiver benefits. I also wanted Brandon to have a flu shot immediately because of his history with H1N1 and the new cases coming up in Austin. During the check on an appointment with the new doctor they said we would have to wait until after Christmas for the shot. UGHHHH. Instead I drove him to our CVS and they gave us both a shot before Christmas.
So I am not feeling like I will get mom of the year this week. We will try to hang until next week and see if we can find a PCP more available and get his benefits restarted.
But all in perspective, we had a great Christmas with my family and Brandon. Besides this snafu, life is good at the moment. We are having a little mommie and Brandon time over Christmas and have watched White Christmas several times. It doesn't get much better.
Happy Holidays everyone from Leah and Brandon.
Last month Brandon did not receive his normal order of Pediasure paid for by Medicaid. Brandon has been on some form of medical formula since birth. It is what maintains his weight. Since birth, my dream for Brandon was for him to eat food just like all the other kids, through the mouth. I wanted to take him off any type of formula. It was a struggle. After 4 years of speech therapy and very little progress with eating food through the mouth, I insisted that Brandon be admitted to a rehabilitation hospital to attempt intensive feeding therapy. We were in the hospital for 3 grueling weeks. Brandon has intensive feeding therapy with the best team in Austin and finally after three weeks, Brandon left able to eat a small amount of pudding each sitting. I know that doesn't sounds like much, but for Brandon it was a total miracle coming from eating nothing. For the next 5 years we worked non-stop with an intensive feeding program. Brandon still had Pediasure added each day to maintain his weight but Brandon was close to a diet that could maintain his weight. At age 9, Brandon had a major setback. He was at school and choked on a hot dog. The school called 911, rushed in the nurses, and called me. By the time I arrived, EMS had cleared his airway but I could tell Brandon had serious aspiration. I bought him home hoping his airway was okay, but we ended up in the hospital within a few hours. Brandon had several swallow studies the next few weeks and it was clear he was aspirating with every swallow and there was possible damage from the Heimlich. We had to start over. Before beginning with a new round of therapy, I consulted with his specialists. They all agreed that eating for Brandon was about quality of life and not about maintaining his weight. They also agreed that Brandon should eat whatever he wanted knowing that the Pediasure would cover the other nutrients. Brandon is always at risk for aspiration but we limit his food to soft safe solids and monitor him when he is eating. It took another year to recover back to eating food safely through the mouth, but Brandon worked hard and he cleared the the swallow studies.
So again this month the Pediasure did not arrive. I called the durable medical equipment company and they said it was pending approval from Medicaid. It had been pending for over a month. In the meantime Brandon was almost completely out of food. I called the Medicaid office and finally found someone who could tell me why it was not approved. Since Brandon had turned 21, they reviewed his records and were not approving Pediasure. But they would consider Ensure (adult formula). We had been talking about moving to Ensure anyway. But I needed a doctors order. I called Brandon's gastroenterologist, but he is out until Jan 5th. That meant that I needed to get an order from his primary care physician. BUT the primary care physician (adult) that I choose already sent us a notice he was leaving his practice. I had another one I was considering, but realized that I needed to get in for a checkup for him to approve. I called and the next appointment was in March.
So now Brandon has no PCP and no Pediasure or Ensure. He also must move his dental coverage to his waiver benefits and must move his speech therapy to waiver benefits. I also wanted Brandon to have a flu shot immediately because of his history with H1N1 and the new cases coming up in Austin. During the check on an appointment with the new doctor they said we would have to wait until after Christmas for the shot. UGHHHH. Instead I drove him to our CVS and they gave us both a shot before Christmas.
So I am not feeling like I will get mom of the year this week. We will try to hang until next week and see if we can find a PCP more available and get his benefits restarted.
But all in perspective, we had a great Christmas with my family and Brandon. Besides this snafu, life is good at the moment. We are having a little mommie and Brandon time over Christmas and have watched White Christmas several times. It doesn't get much better.
Happy Holidays everyone from Leah and Brandon.
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